Stanford Appointments

Last week we had a full week of appointments for the kids. The one I was looking forward to the most was the one to see the specialist at Stanford who actually knew something about FPIES and everything else that falls on the non-IgE allergy spectrum (EGID's and enteropathies and everything in between).

I will admit to feeling a bit disappointed with our first appointment especially after having a few days to think about it.

We spent the first hour giving the history to a very eager resident. She obviously had read about FPIES to prepare for our appointments and knew all the "textbook" stuff (funny because I'm sure if there is anything about FPIES in a text book it would be very limited knowledge in more ways than one). She asked all the questions that spelt out she had never really seen a patient with anything on this spectrum. I held my tongue many times and was patient because I have been on the other side. I have been the student learning from patients in a hospital and eager to see in person what I had learnt about in the textbooks.

She then left and I knew she was going to discuss our cases with the Dr. and he would push her to come to some conclusions and bla bla bla. Well 35 mins later they finally came back in. At that point we were starting to loose it. Two children under 22months in a small room for over 1 and 1/2 hours was starting to get old.

The Dr came in and the first thing he said was "So what can I do for you?" (OK so rewind a few months back when we had an allergist who would not help us and that was the last thing she said to me before denying my children a referral to Stanford). So needless to say this totally rubbed me the wrong way. I quickly moved passed my frustration to try to figure out what he meant by walking in and asking us this question. Isn't he the Dr., shouldn't he be the one to look at the children's histories and tell us what he thought? I am still not to sure what to make of this.

I just responded by a short history and what we have done so far and other stuff that I cannot remember. He agreed that the next step would be endoscopies of the full digestive tract to rule out or include other findings (but my instinct tells me it may not shed much light on our situation, but if it does I will be very pleased!) and once the results are in we would most likely move forward to an in hospital food trial.

His next step was to ask us to pick a "convenient" food that has been previously failed to do the in hospital food trial. Well this rubbed me the wrong way also for many reasons.

1. There is NOTHING CONVENIENT about having children who cannot eat food and who gives a crap about CONVENIENCE if it causes your child pain. We don't care what is convenient, we want our children to be able to eat anything once it doesn't cause pain. So if someday they can only eat millet or quinoa and most people have never heard of these things I really don't care because at least they can eat SOMETHING. Dairy, soy, wheat and all the other foods we have failed I guess would be considered convenient.

2. T-cells in the GALT system take a minimum of 18 months to shed. Each time you eat the food that you react to the memory on the T-cell becomes more ingrained. The more ingrained the memory becomes the higher the possibility that even when the T-cells shed the reaction will occur again. We have not passed 18 months with any of our food trials (we would have for rice but she was exposed to it in another food we tried around 11 months of age). Some would say well you haven't reached it why not just do the trail. Well we have been trying to get beyond a baseline to a place of healing and gut homeostasis. Therefore a trial of a known allergen will set us back. Right now it may not be by too much because Hayls has had a few set backs but the idea of moving backwards just makes me feel uneasy, and it takes so looonnnnnnggggg to get back to baseline and pain free place for her.

3. He said he has never seen her have a reaction so this would give him the opportunity to do so and run any tests while the reaction was occurring. That it might give them an idea of where in the digestive tract things were going wrong. Not sure if I buy all this either, I still think it is more like "we have no clue what is going on so lets run the experiment again and see what happens" type of thinking.

4. Most of Her reactions are delayed so staying in the hospital 24 hrs may not show anything and then we are stuck at home with a sick child for days after.

He went on to talk about the kids maybe having some sort of enteropathy which means a reaction in the lower intestines which may be possible but most enteropathies from what I understand are outgrown by 2 to 3 and we are at 2 with only one food that she isn't always interested in. So hmmmmmm I think kind of unlikely and seems we are dealing with more than "just an enteropathy".

By now I am sure if you have gotten this far you are wondering why am I still entertaining this Dr. I am second guessing myself and I'm not sure if he is a good fit for us but at the end of the appointment I pushed him......

He kept saying that not much is known about these disorders and that all we have is the research being done but that the research was just that only research. That nothing is for sure. It was almost like he was constantly giving a disclaimer. Like he didn't know what box to fit the children in so he just had to tip toe around the whole issue.

I took the tests results from Dr. J in NJ for him to look at and see what he thought. I was hoping he would shed some light on them. He once again said the whole disclaimer stuff, but at that point I just gave him a summary of what I understood of the current research. I think he then realized that I was not going to settle for the disclaimer and he needed to give me something to shut me up.

At that point he looked at Hayls results for about the 3rd time, but this time really looked at it and said she may have some oral tolerance due to her IL-12 levels. I hadn't spoken of oral tolerance once during the appointment. I knew he knew ALOT more than he was letting on and I knew previously that he had done some T-cell research himself.

The only reason I am willing to give him a second chance is because of his knowledge of the current research. Not because I agree with his approach so far, but who knows maybe the second time around things will be different.